Tag Archives: Asperger’s

I’ve been thinking a lot about disability in the wake of the recent school shooting in Connecticut. I am sad that so many people’s reaction is to blame mental illness or autism. It especially bothers me when people call for “more services for mental health.” The implicit assumption that mental health problems make people violent, and that mental health services are mainly there to help protect non-disabled people from those of us with mental illness, actually hurts people with mental illness. These calls for services sound so benevolent that it’s hard to call people out on it. But one of the main barriers to accessing services is stigma. Another barrier to services is the fact that many programs were created in the wake of violent tragedies like this one, which means that they’re (1) coercive, and (2) only available to people who are seen as likely to become violent.

After I posted these thoughts on Facebook, someone asked me which organizations I’d recommend to people who are interested in donating to a mental health/autism advocacy organization that focuses on actually helping people with disabilities AND helps oppose stigma and discrimination. Here’s a short list of organizations I’ve actually worked with and would wholeheartedly endorse:

Autistic Self Advocacy Network. Run by and for Autistic people, this organization has proven amazingly effective at advocating for policies that improve services AND decrease segregation and discrimination against adults and children on the autism spectrum, including people with a wide range of support needs.

Bazelon Center for Mental Health Law. This organization focuses on the rights people with psychiatric disabilities and has been doing great work advocating for children with serious behavioral needs. They help fight discrimination and advocate for supports and services to help people remain in the community.

Trauma and Learning Policy Initiative. This project of Massachusetts Advocates for Children focuses on helping children who have experienced trauma (such as the children who were affected by the school shooting). They focus on improving teachers’ understanding of the emotional effects of trauma and helping schools become “trauma-sensitive environments.” This helps traumatized children stay in mainstream school environments where they have a better chance of academic success and long-term recovery. Although they’re a project of Massachusetts Advocates for Children, they do nationwide public education and advocacy to help children across the country succeed in school. This is a really small project and it gets limited publicity, but it does a lot of good.

I intend to post something more personal about this issue today or tomorrow. But it’s hard to write, and I figured in the meantime it would be good to offer people some options for advocacy/donations if they were interested.

I never got around to mentioning it on this blog, but a few months ago I took a dive into the world of “BigLaw” (i.e., large, for-profit law firms). My fellowship at the mental health law nonprofit came to an end, and, seeking more litigation experience, I landed a job at a global law firm in an office that focuses largely on patent law (I purposefully avoided law firms doing disability law, as they’re usually on the side of corporations defending against discrimination claims, which would in many circumstances make me uncomfortable).

It’s been an awesome experience so far, and a bit of a culture shock. I’m certainly not “out” at this new place, as I’d like to give people the opportunity to come to their own conclusions about me and my skills before I disclose a disability (when disclosing, there’s always the risk that people will interpret every mistake you make or every quirk you have as a “symptom” and come to negative conclusions). Being in the closet requires a certain amount of complex maneuvering, which so far has included: (1) disclosing single aspects of my disability without disclosing the actual full diagnosis; (2) taking decompression breaks in my office with the door closed, which luckily most people interpret as me being really busy; (3) coming up with really creative sensory toys that “pass” as athletic equipment or normal desk toys or jewelry (I even have started a tumblr blog about this, Sensory Squids).

That said, patent litigation is really fun. I’m a bit of an autistic stereotype in that I greatly enjoy math and technology, and many of the other lawyers have advanced degrees in science and are therefore used to dealing with geeks even if they aren’t geeks themselves.

So with that, I give you perhaps the most ridiculous patent ever granted:

I’m pretty sure what happened here is that a patent lawyer was very amused by his child’s innovative technique of swinging on the swingset, and decided to try to patent it. The fact that this patent was awarded is truly amazing. I wonder how they’d ever collect royalties on it.

Although I think of myself as having a single, neurologically-based disability with a variety of manifestations, I’ve collected a variety of different diagnoses.

The first one I remember receiving was “Tic Disorder NOS” in high school, after my parents finally brought me to a neurologist for my neck tics (which were the inspiration for my current pseudonym and were severe enough that I now have degenerative disc disorder in my neck, although they’re currently well-managed with medication).

I came back to the same neurologist in college, complaining that I was still having issues with compulsive skin-picking and hair-pulling and that I would occasionally get “stuck” in certain activities for hours even when I had other things to do. That earned me a diagnosis of OCD.

Parents and educators had been trying to get me evaluated for ADHD since at least middle school, and I rather clearly had it, but I refused to submit to an evaluation or take medication until law school, when many of my academic self-accommodation strategies (such as participating extensively in class to keep my mind from wandering) stopped being available. Finally, in Spring 2008, I finally caved and went to a neuropsychologist to be evaluated for ADHD. I also suspected Asperger’s by that point, and told them to the evaluator, including a pretty comprehensive description of what I was like as a child. She agreed, and diagnosed me with both ADHD and Asperger’s.

When I mention pretty much any of my diagnoses other than Asperger’s, people mostly just nod and accept it. Of course it’s possible to be a successful human being and also have ADHD, OCD, or tics. But whenever I mention the Asperger’s diagnosis, the response is frequently something along the lines of “really?”, “I find that hard to believe,” or “maybe, but it’s very mild.” After all I have excelled academically and have a job at which I’m competent, and not even as a scientist or programmer or one of those other jobs that people on the autism spectrum are supposed to be especially good at. How can you even BE a lawyer and have Asperger’s?

This sort of response is exactly why I haven’t explicitly disclosed this diagnosis to more than two people whom I know professionally. I want people to perceive me as a competent employee or co-worker, so I can’t exactly respond to their skepticism by listing all of the things I can’t do or have significant trouble doing. I’ve spent years learning essential career skills, often to the exclusion of general life skills, and consider myself highly competent at activities relevant to my work performance. But if I start listing all of the non-work things that I have trouble doing, there’s always the risk that someone will have a hard time believing that I can’t do those things but can still work.

Discussions about social skills are particularly problematic. The main symptom that people associate with Asperger’s Syndrome is serious social deficit – the stereotype is of a person who absolutely can’t understand the feelings of others and is constantly committing social faux pas and ranting about boring topics. However, I actually think that, when you define “social skills” appropriately, I now have at least average social skills and higher-than-average social self-awareness. Although I had serious social problems in childhood, my usual response to those problems was to spend tons of energy trying to figure out what I was doing wrong and fix it. I read books on human behavior, studied psychology, and pestered my friends for detailed analyses of their feelings.

When people describe me as “high-functioning” and doubt my Asperger’s diagnosis, they’re usually thinking mainly of my ability to carry on a natural-seeming conversation for a short period of time, including making eye contact and reading facial expressions. It pleases me that they think I’m good at this, since I worked hard at that skill, and I have absolutely no interest in convincing them that I am actually less socially skilled than they think I am. At the same time, there’s usually a reason that I told them that I had Asperger’s, so simply letting them believe that I don’t – or that its effects on me are negligible – is not an acceptable option.

So far, I’ve settled into the habit of saying something along the lines of “thank you, I worked hard on that skill, and actually Asperger’s involves a range of sensory and attentional differences aside from social conversations. In fact, I was mainly mentioning my Asperger’s diagnosis to explain xyz,” where xyz is usually a past experience, a sensory or attentional issue that I’d like to be acknowledged or accommodated, or a very specific “social” issue such as my extreme difficulty remembering people’s names or faces (incidentally, I do recognize faces well enough to tell that I have met someone before, but I have difficulty remembering their name or where I’ve met them and frequently have to “reconstruct” this information from contextual cues. I would rather people know that this is a neurological issue than think I don’t care about them enough to remember them).

I have to say, even this hasn’t entirely worked. I am even in a bit of a war with my cognitive-behavioral therapist (whom I see to treat my social anxiety and compulsive skin-picking) on whether my Asperger’s diagnosis is even relevant to my treatment. And I’m constantly worrying that my one co-worker who knows I have Asperger’s is now underestimating my social skills and judgment. I desperately wish that I could tell some friendly colleagues about my diagnosis so that they can give me advice about networking, which is a significant lacuna in my social skills repertoire and has the potential to dramatically interfere with my career (I am currently looking for a new job), but it seems like a dangerous move.

The world needs more professionals who are open about being on the autism spectrum. I know I am not the only Aspie in the legal profession – I am pretty sure I wasn’t even the only one in my law school graduating class (not by far). As far as I can tell, this is the only way to make the profession (and other similar professions) a bit more friendly to people on the spectrum, and I can’t exactly count on others to do what I’m too scared to do myself. Someone has to blaze a trail. But being an autistic trailblazer, especially early in my career before I’m well-established, is daunting. Even if I’m socially “high-functioning,” disclosing a disability – especially one as stigmatized as autism spectrum disorder – is a minefield even for people who are highly socially competent. I hope that talking about it here will help me sort through how to act, what to say, and what to expect.